Avery Grace

Saturday, February 14, 2015

Holiday Letter 2014

Hearts Full of Love

There is a quote I love that says “If you think our hands are full, then you should see our hearts.” THIS is our new family motto. 2014 started out with a bang as we welcomed our 4th precious baby. Paxton Graham Beeson arrived on January 10th, and this little dude has stolen our hearts every day since. He and his three sisters fill our souls with love and joy, and we are certainly savoring every moment of his baby days and being mindful to live each day to the fullest.

2014 marked another big event in that Bryan and I have now spent 10 holiday seasons together as a married couple! This past October we celebrated our 10th wedding anniversary. We both feel so blessed to share our lives together, and are excited for a lifetime of memories to come.

2014 was certainly not short on life lessons, beautiful moments and a few heartaches. Weeks after we welcomed our beloved son in to our family, we learned of some potential serious risks to his health and development. The first signs were a failed newborn screening, and club feet, and then in the weeks to come we grew concerned with his rapid head growth and delays in developing motor skills. In the months that followed, and after countless doctors and specialists, we learned that Paxton has a brain condition known as ventriculomegaly /communicating hydrocephalus. Despite the grim and potentially life threatening diagnoses, Pax-man has defied the odds and continues to develop at his own pace, making steady progress and smiling and laughing all the way! He is an absolute joy, and he brings so much laughter and light in to our home and hearts.

Presley Hope, our funny, easygoing 4 year old continues to thrive in whatever environment we throw her in! She loves preschool, dance, swimming and gymnastics, and keeps us giggling with her quick wit and awesome sense of humor.

Kaylin Joy is a first grader now! She continues to keep us on our toes, and though she challenges us at times as parents, she has such a loving spirit, and is an AMAZING big sister. She is about to embark on her first volleyball season (she’s a good head taller than your average first grader,) and enjoys gymnastics, swimming and being a daisy scout.

Our sweet Avery Grace is plugging along as well. It’s always a little hard to answer when well meaning friends and family ask how Avery is doing. The short answer is, “great!” The long answer would entail a detailed description of how we learned long ago to throw out our expectations of Avery, and just enjoy her for who she is and what she can do. In truth, Rett Syndrome/severe autism has taken away so much from our precious daughter. At 8, Avery is still and likely always will be 100% dependent on us to meet her every single need from feeding, to dressing to diapering and so on. However, her easy going nature and genuinely happy disposition bring a soothing peace to our sometimes chaotic household, and we adore her- just as she is. She is able to understand some simple language, and can identify pictures and some basic wants on her iPad, which is also her communication device. Between Avery and Paxton, we literally clock in over 25 hours of therapy a week, not to mention doctor visits and trips to and from the girls’ three different schools. But as busy as we are, our time together as a family is all the more cherished and appreciated.

Thankfully, this summer we were able to get away for a week in Atlanta visiting family, followed immediately by a week in Destin, Florida. It was so good for our souls. The energy from the ocean and love we felt from friends and family were so uplifting and rejuvenating. It was our first family vacation in a long time and we loved (most) every minute of it. All in all, life is pretty wonderful for us. The challenges we face as a family really do seem to make us stronger and more grounded. We don’t sweat the small stuff, and try to remember daily the joy of living life in gratitude. We are so incredibly blessed by our supportive family, friends, therapists and an outstanding caregiver for our kids. It’s the relationships in life that make it worth living, and thankfully, we have many that we hold dear and that enrich our lives tremendously. We hope your holiday season and 2015 are full of light and laughter, and we ask that you keep Paxton, Avery, Kaylin and Presley in your thoughts as we continue their paths toward healing and wellness.

About Me

My most important life roles at the moment are to be the wife of Bryan Beeson and mother of Avery Grace, Kaylin Joy, Presley Hope and Paxton Graham. Paxton is two with many medical complications resulting from a fluke mutation on his 2nd chromosome causing Tatton-Brown Rahman Syndrome, and Avery is 10 and has Autism/ Rett Syndrome/ and now Phelan McDermid Syndrome diagnoses. I am a developmental specialist and behavior analyst trained in many different techniques of child development (can you imagine the irony) and have been working with children on the autism spectrum for 16 years. Now personally impacted, I want more than ever to find answers, see change and somehow discover peace and magic in the wonders of disability.

A little about Mastocytosis . . .

Mastocytosis is a group of rare disorders of both children and adults caused by the presence of too many mast cells (mastocytes) and CD34+ mast cell precursors in a person's body. It can affect just the skin or it can also affect internal organs such as the stomach, lungs, and intestines.

Patients with Mastocytosis may feel better when taking reflux meds and antihistamines. Proton pump inhibitors help reduce production of gastric acid, which is often increased in patients with mastocytosis.